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OBJECTIVE: To create a census-based composite neighborhood socioeconomic deprivation index (NSDI) from geocoded residential addresses and to quantify how NSDI aligns with individual-level socioeconomic factors among people with traumatic brain injury (TBI). SETTING: Community. PARTICIPANTS: People enrolled in the TBI Model Systems National Database (TBIMS NDB). DESIGN: Secondary analysis of a longitudinal cohort study. MAIN MEASURES: The TBIMS-NSDI was calculated at the census tract level for the United States population based on a principal components analysis of eight census tract-level variables from the American Community Survey. Individual socioeconomic characteristics from the TBIMS NDB were personal household income, education (years), and unemployment status. Neighborhood:Individual NSDI residuals represent the difference between predicted neighborhood disadvantage based on individual socioeconomic characteristics versus observed neighborhood disadvantage based on the TBIMS-NSDI. RESULTS: A single principal component was found to encompass the eight socioeconomic neighborhood-level variables. It was normally distributed across follow-up years 2, 5, and 10 post-injury in the TBIMS NDB. In all years, the TBIMS-NDSI was significantly associated with individual-level measures of household income and education but not unemployment status. Males, persons of Black and Hispanic background, Medicaid recipients, persons with TBI caused by violence, and those living in urban areas, as well as in the Northeast or Southern regions of the United States, were more likely to have greater neighborhood disadvantage than predicted based on their individual socioeconomic characteristics. CONCLUSIONS: The TBIMS-NSDI provides a neighborhood-level indicator of socioeconomic disadvantage, an important social determinant of outcomes from TBI. The Neighborhood:Individual NSDI residual adds another dimension to the TBIMS-NSDI by summarizing how a person's socioeconomic status aligns with their neighborhood socioeconomics. Future studies should evaluate how both measures affect TBI recovery and life quality. Research studying neighborhood socioeconomic disadvantage may improve our understanding of how systemic adversity influences outcomes after TBI.
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OBJECTIVE: To develop composite measures of neighborhood economic factors for use with the national Spinal Cord Injury Model Systems (SCIMS) database in cross-sectional and longitudinal investigations of the social determinants of health. DESIGN: Secondary data analysis of administrative data from the 2009, 2014, and 2019 American Community Survey (ACS) 5-year estimates and survey data collected for the SCIMS database. SETTING: Community INTERVENTIONS: Not applicable PARTICIPANTS: The validity of the neighborhood economic measures developed from the ACS data was tested with a sample of SCIMS participants who completed a follow-up interview between 2017-2021 (N=8,130). The predictive validity of the neighborhood measures was assessed with a subsample of cases with complete data on the outcome and covariate measures (N=6,457). MAIN OUTCOME MEASURES: A binary measure of self-rated health status (1=poor/fair health; 0=good/very good/excellent), RESULTS: A combination of panel review and data reduction techniques yielded two distinct measuring neighborhood socioeconomic status (SES) and neighborhood socioeconomic disadvantage that were validated using three waves of ACS data and the SCIMS data. The odds of reporting poor health were lower among people living in moderate and high SES neighborhoods and highest among people living in moderately and highly disadvantaged neighborhoods. The negative association between neighborhood SES and poor health was fully attenuated by differences in participants' individual demographic and economic characteristics whereas the positive association between neighborhood disadvantage and poor health persisted after adjusting for individual differences. CONCLUSIONS: The two composite measures of neighborhood economic factors developed by this study are robust in samples from different periods of time and valid for use with the SCIMS database. Future investigations conducting surveillance of the needs of the SCI population using this resource may consider using these measures to assess the impact of the social determinants of health in outcomes after SCI.
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PURPOSE: Children with Special Health Care Needs (CSHCN) may experience disruptions in education due to extended hospitalizations. The purpose of this study was to describe how CSHCN experience educational supports during inpatient rehabilitation and identify the ongoing challenges when planning to return to school. MATERIALS AND METHODS: Semi-structured focus groups were conducted with parents (n = 12), former patients (n = 20), and rehabilitation professionals (n = 8). RESULTS: Through qualitative thematic analysis based on descriptive phenomenology, we developed three themes: 1) Inpatient educational support such as instruction and schoolwork helped reduce the learning loss during hospitalization. However, these supports were sometimes complicated by lags in school approvals and challenges in coordination between systems. 2) Transition planning involved establishing necessary services to support CSHCN's educational and healthcare needs at school re-entry. However, families reported limited information and guidance as key barriers. 3) Dynamic courses of school re-entry required continued support after discharge. The participants recommended that reassessment and adjustment of transition plans were often necessary to account for evolving developmental and educational needs but were not always received. CONCLUSIONS: There is an ongoing need to improve communication between clinicians and educators, information for families, and long-term follow-up on the changing educational needs for CSHCN after rehabilitation.
School re-entry after extended hospitalization is challenging for children with special health care needs (CSHCN) due to school disruption, social disconnection, and change in functional abilities.The hospital-to-school transition processes include inpatient educational programs during hospitalization, pre-discharge transition planning, and the subsequent implementation and adjustment of transition plans to facilitate individualized school re-entry.Key areas in need of improving school re-entry include coordination between the hospital and school about rehabilitation and educational goals and information provided to families about transition processes, particularly for newly acquired health conditions.A common need expressed by parents and CSHCN is to simplify and accelerate the process to establish services that support children's educational and healthcare needs.
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Central cord syndrome (CCS) is the most prevalent and debated incomplete spinal cord injury (SCI) syndrome, with its hallmark feature being more pronounced weakness of the upper extremities than of the lower extremities. Varying definitions encapsulate multiple clinical features under the single umbrella term of CCS, complicating evaluation of its frequency, prognosis discussions, and outcomes research. Often, people with CCS are excluded from research protocols, as it is thought to have a favorable prognosis, but the vague nature of CCS raises doubts about the validity of this practice. The objective of this study was to categorize CCS into specific subsets with clear quantifiable differences, to assess whether this would enhance the ability to determine if individuals with CCS or its subsets exhibit distinct neurological and functional outcomes relative to others with incomplete tetraplegia. This study retrospectively reviewed individuals with new motor incomplete tetraplegia from traumatic SCI who enrolled in the Spinal Cord Injury Model Systems (SCIMS) database from 2010 to 2020. Through an assessment of the prevailing criteria for CCS, coupled with data analysis, we used two key criteria, including the severity of distal upper extremity weakness (i.e., hands and fingers) and extent of symmetry, to delineate three CCS subsets: full CCS, unilateral CCS, and borderline CCS. Of the 1490 participants in our sample, 17.5% had full, 25.6% had unilateral, and 9% had borderline CCS, together encompassing >50% of motor incomplete tetraplegia cases. Despite the increased sensitivity and specificity of these subsets compared with existing quantifiable criteria, substantial variability in clinical presentation was still observed. Overall, individuals meeting CCS subset criteria showed a higher likelihood of American Spinal Injury Association (ASIA) Impairment Scale (AIS) D grade than those with motor incomplete tetraplegia without CCS. Upper Extremity Motor Score (UEMS) for those with CCS was lower on admission, a difference that diminished by discharge, whereas their Lower Extremity Motor Score (LEMS) consistently remained higher than for those without CCS. However, these neurological distinctions did not result in significant functional differences, as lower and upper extremity functional outcomes at discharge were mostly similar, with some differences observed within those with AIS D grade. The AIS grade, rather than the diagnosis of CCS, remains the foremost determinant influencing neurological and functional outcomes. We recommend that future studies consider incorporating motor incomplete tetraplegia into their inclusion/exclusion criteria, instead of relying on criteria specific to CCS. Although there remains clinical value in characterizing an injury pattern as CCS and perhaps using the different subsets to better characterize the impairments, it does not appear to be a useful research criterion.
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CONTEXT: There is limited research on return to education (RTE) after spinal cord injury (SCI). As a result, few programs exist to help people achieve this goal. OBJECTIVE: The primary objective was to investigate the barriers and facilitators to RTE, and the relationship between RTE and quality of life (QOL). The secondary objective was to examine the role of a Vocational Resource Facilitation (VRF) program on RTE. METHODS: A mixed methods approach with a semi-structured interview and online survey was used. Participants included 15 people with SCI with RTE goals who received VRF services at an acute inpatient rehabilitation hospital. Qualitative responses on the barriers, facilitators and perceived benefits of RTE were analyzed using a grounded theory strategy. RESULTS: Barriers to RTE included physical and mental health, transportation, time, environmental barriers, finances, lack of knowledge about available resources, and discrimination. Facilitators to RTE included the VRF program, social support, financial support, virtual learning, organizational support, and policy constructs. People who RTE after SCI reported better QOL, less depressed mood than those who did not, and were more likely to have returned to work. CONCLUSIONS: This study highlighted common barriers and facilitators to RTE, and potential areas of intervention. VRF is a potentially efficacious early intervention vocational rehabilitation approach that improves participation in education and employment for people with SCI. People who received VRF and achieved RTE may have better QOL outcomes and improved employability.
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OBJECTIVE: To identify patient factors associated with acute care transfer (ACT) among cancer survivors admitted for inpatient medical rehabilitation. DESIGN: An exploratory, observational design was used to analyze retrospective data from electronic medical records. SETTING: Data were obtained from 3 separate inpatient rehabilitation hospitals within a private rehabilitation hospital system in the Northeast. PARTICIPANTS: Medical records were reviewed and analyzed for a total of 416 patients with a confirmed oncologic diagnosis treated in 1 of the inpatient rehabilitation hospitals between January and December 2020. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The primary outcome measure was the incidence of an ACT. Covariates included the adapted Karnofsky Performance Scale (KPS) for inpatient rehabilitation, demographic information, admission date, re-admission status, discharge destination, and cancer-related variables, such as primary cancer diagnosis and presence/location of metastases. RESULTS: One in 5 patients (21.2%) were transferred to acute care. Patients with hematologic cancer had a higher risk of ACT compared with those with central nervous system (CNS) cancer. Lower functional status, measured by the adapted KPS, was associated with a higher likelihood of ACT. Patients with an admission KPS score indicating the need for maximum assistance had the highest transfer rate (59.1%). CONCLUSIONS: These findings highlight the medical complexity of this population and increased risk of an interrupted rehabilitation stay. Considering patients' performance status, cancer type, and extent of disease may be important when assessing the appropriateness of IRF admission relative to patient quality of life. Earlier and improved understanding of the patient's prognosis will allow the cancer rehabilitation program to meet the patient's unique needs and facilitate an appropriate discharge to the community in an optimal window of time.
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Avaliação de Estado de Karnofsky , Neoplasias , Transferência de Pacientes , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Estudos Retrospectivos , Idoso , Transferência de Pacientes/estatística & dados numéricos , Neoplasias/reabilitação , Hospitais de Reabilitação , Sobreviventes de Câncer/estatística & dados numéricos , Adulto , Centros de Reabilitação , Pacientes Internados/estatística & dados numéricos , Medição de RiscoRESUMO
Background: Residential mobility after spinal cord injury (SCI) has not been extensively examined despite a growing interest in investigating the relationship between neighborhood exposures and community living outcomes. Objectives: This study explores residential mobility patterns, the annual move rate, and reasons for moving among a community-living sample of adults with SCI. Methods: A survey was conducted with 690 people at six SCI Model Systems centers in the United States between July 2017 and October 2020. The outcomes included move status in the past 12 months, move distance, and the primary reason for moving. A sample from the 2019 American Community Survey (ACS) 5-year pooled estimates was obtained for comparative analysis. Descriptive statistics were used to summarize the distributions of the outcomes and differences between the samples. Results: The annual move rate for adults with SCI was 16.4%, and most moves were within the same county (56.6%). Recent movers were more likely to be young adults, be newly injured, and have low socioeconomic status. Housing quality, accessibility, and family were more frequently reported motivations for moving compared to employment. Young adults more commonly moved for family and accessibility, whereas middle-aged adults more commonly moved for housing quality. No notable difference was observed in the annual move rate between the SCI and the general population samples. Conclusion: These findings suggest an age-related pattern of residential relocation after SCI, which may be indicative an extended search for optimal living conditions that meet the housing and accessibility needs of this population.
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Traumatismos da Medula Espinal , Pessoa de Meia-Idade , Adulto Jovem , Humanos , Traumatismos da Medula Espinal/epidemiologia , Características de Residência , Inquéritos e Questionários , Dinâmica Populacional , EmpregoRESUMO
IMPORTANCE: This study provides information to clinicians about how persons with MS coped in both positive and negative ways during a potentially traumatic experience (the coronavirus disease 2019 [COVID-19] pandemic), which will help clinicians to provide better services to this population in the face of stressful events. OBJECTIVE: To describe both positive and negative outcomes among persons with multiple sclerosis (MS) and to examine whether resilience and social support were related to positive and negative outcomes during the peak of the pandemic. DESIGN: An online survey administered during the COVID-19 pandemic. PARTICIPANTS: Participants were 74 individuals with MS and 104 healthy controls (HCs) recruited through social media and community support groups. OUTCOMES AND MEASURES: The survey included questionnaires that assessed both positive and negative responses to the pandemic, including benefit finding, loneliness, and distress. Resilience and social support were also assessed. RESULTS: Differences were noted between persons with MS and HCs on negative but not positive outcomes. Better social support and resilience were related to positive outcomes. CONCLUSIONS AND RELEVANCE: Both persons with MS and HCs were similar in benefit finding and stress management. However, negative outcomes were worse in the MS group. Our findings shed light on the importance of individuals with MS adopting a positive outlook to help during times of adversity. What This Article Adds: Among persons with disabilities such as multiple sclerosis, finding benefits during stressful times can be a potential coping mechanism. Furthermore, resilience and social support should be taken into account to moderate the effects of adverse events.
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COVID-19 , Esclerose Múltipla , Humanos , Pandemias , Apoio Social , Adaptação PsicológicaRESUMO
CONTEXT: In people with spinal cord injury (SCI), infections are a leading cause of death, and there is a high prevalence of diabetes mellitus, obesity, and hypertension, which are all comorbidities associated with worse outcomes after COVID-19 infection. OBJECTIVE: To characterize self-reported health impacts of COVID-19 on people with SCI related to exposure to virus, diagnosis, symptoms, complications of infection, and vaccination. METHODS: The Spinal Cord Injury COVID-19 Pandemic Experience Survey (SCI-CPES) study was administered to ask people with SCI about their health and other experiences during the COVID-19 pandemic. RESULTS: 223 community-living people with SCI (male = 71%; age = 52±15 years [mean±SD]; paraplegia = 55%) completed the SCI-CPES. Comorbidities first identified in the general population as associated with poor outcomes after COVID-19 infection were commonly reported in this SCI sample: hypertension (30%) and diabetes (13%). 23.5% of respondents reported a known infection exposure from someone who visited (13.5%) or lived in their home (10%). During the study, which included a timeframe when testing was either unavailable or scarce, 61% of respondents were tested for COVID-19; 14% tested or were presumed positive. Fever, fatigue, and chills were the most common symptoms reported. Of the 152 respondents surveyed after COVID-19 vaccines became available, 82% reported being vaccinated. Race and age were significantly associated with positive vaccination status: most (78%) individuals who were vaccinated identified as Non-Hispanic White and were older than those who reported being unvaccinated (57±14 vs. 43±13 years, mean±SD). CONCLUSIONS: Self-reported COVID-19 symptoms were relatively uncommon and not severe in this sample of people with SCI. Potential confounders and limitations include responder, recruitment and self-reporting biases and changing pandemic conditions. Future studies on this topic should query social distancing and other behavioral strategies. Large retrospective chart review studies may provide additional data on incidence and prevalence of COVID-19 infections, symptoms, and severities in the SCI population.
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CONTEXT: Early during the COVID-19 pandemic, rehabilitation providers received reports from people with spinal cord injury (SCI) of considerable disruptions in caregiver services, medical and nursing care, and access to equipment and supplies; concomitantly, the medical community raised concerns related to the elevated risk of acquiring the infection due to SCI-specific medical conditions. Due to the novel nature of the pandemic, few tools existed to systematically investigate the outcomes and needs of people with SCI during this emergency. OBJECTIVE: To develop a multidimensional assessment tool for surveying the experience of the COVID-19 pandemic on physical and psychological health, employment, caregiving services, medical supplies and equipment, and the delivery of medical care for people with SCI. METHODS: The Spinal Cord Injury COVID-19 Pandemic Experience Survey (SCI-CPES) study, conducted between July 2020 through August 2021, surveyed people with SCI about their experiences during the early COVID-19 pandemic. The SCI-CPES was developed by a SCI care and research consortium using an iterative process. RESULTS: Two hundred and twenty-three people completed the survey. Most respondents resided in the consortium catchment area. As the survey progressed, online informed consent became available allowing dissemination of the SCI-CPES nationally. CONCLUSIONS: The consortium rapidly implemented the capture of experiences with COVID-19 pandemic directly from people with SCI, including survey creation, institutional approvals, distribution, online e-consenting, and data collection. In the future, the SCI-CPES is adaptable for use in other types of emergencies and disasters.
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OBJECTIVE: Many infants with neonatal opioid withdrawal syndrome (NOWS) from prenatal exposure to opioids require transfer to a pediatric inpatient unit for medication weaning. The purpose of this study is to assess the difference in the duration of medication weaning between infants transferred by day of life (DOL) 14 versus later (DOL 15 and after) to a tertiary care setting for pharmacological and nonpharmacological management of NOWS. METHODS: This single-site retrospective cohort study uses medical chart data from infants with NOWS transferred to specialized care between May 2016 and June 2021 (n = 87). The primary outcome is length of medication weaning, calculated as the number of days between transfer from the NICU to a tertiary care setting and the cessation of pharmacotherapy. RESULTS: The majority of the infants in this sample are transferred from acute to tertiary care after DOL 15 (62% versus 38% by DOL 14). The predicted number of days to wean is 14.2 among those infants transferred by DOL 14, whereas the duration of weaning is 6.6 days longer among the later transfer group (20.8 days), adjusting for key covariates. The duration of weaning is also prolonged among infants with greater NOWS symptom severity and with prenatal exposure to psychotropic medications. CONCLUSIONS: Delayed treatment prolongs NOWS symptoms and increases the burden on the health care system. Earlier referral from NICUs to pediatric inpatient units with environmental supports could reduce prolonged medication exposure and length of hospitalization for infants diagnosed with NOWS.
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Síndrome de Abstinência Neonatal , Efeitos Tardios da Exposição Pré-Natal , Recém-Nascido , Lactente , Gravidez , Feminino , Criança , Humanos , Analgésicos Opioides/uso terapêutico , Desmame , Efeitos Tardios da Exposição Pré-Natal/tratamento farmacológico , Estudos Retrospectivos , Síndrome de Abstinência Neonatal/tratamento farmacológicoRESUMO
Background: The consequences of spinal cord injury (SCI) can place significant demands on an individual's coping mechanisms. Interventions to promote psychological adjustment and coping are often included in inpatient rehabilitation programs; however, following discharge, many individuals with SCI do not receive ongoing counseling or education about psychological adjustment to disability. Effective postacute treatment models are needed to help individuals with SCI build skills that help them adapt to the stresses associated with a chronic physical disability, alleviate the consequences of anxiety and depression, and enhance subjective well-being. Objectives: To describe the protocol for a randomized clinical trial (RCT) of a 6-week intervention designed to improve psychosocial outcomes after SCI. Methods: To test efficacy and replicability of the intervention, we designed a three-arm, multisite RCT with assessments conducted at six time points. Our primary hypothesis is that participants in the Group arm will report greater improvements in psychosocial outcomes than participants who complete the intervention individually via video (Individual arm) or those who do not receive the intervention (Control arm). We also hypothesize that participants in the Group arm will maintain greater improvements in psychosocial outcomes longer than those in the individual or control arms. Conclusion: Results of the RCT will be presented and published to professionals and consumers, and intervention training and materials will be made available upon request.
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Traumatismos da Medula Espinal , Humanos , Adaptação Psicológica , Alta do Paciente , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
New learning and memory impairments are common in Multiple Sclerosis (MS) and negatively impact everyday life, including occupational and social functioning. Despite the demand for learning and memory treatments, few cognitive rehabilitation protocols are supported by Class I research evidence, limiting the degree to which effective treatments may be utilized with persons with MS. The present double-blind, placebo controlled randomized clinical trial (RCT) examines the efficacy of an 8-session cognitive rehabilitation protocol encompassing training in the application of three strategies with the strongest empirical evidence (self-generation, spaced learning and retrieval practice) to treat impaired learning and memory in persons with MS, Kessler Foundation Strategy-based Training to Enhance Memory (KF-STEM™). A sample of 120 participants with clinically definite MS who have impairments in new learning and memory will be enrolled. Outcomes will be assessed via three mechanisms, an Assessment of Global Functioning, which examines everyday functioning and quality of life, a Neuropsychological Evaluation to examine objective cognitive performance, and functional Magnetic Resonance Imaging to examine the impact of treatment on patterns of cerebral activation. We will additionally evaluate the longer-term efficacy of KF-STEM™ on everyday functioning and neuropsychological assessment through a 6-month follow-up evaluation and evaluate the impact of booster sessions in maintaining the treatment effect over time. The methodologically rigorous design of the current study will provide Class I evidence for the KF-STEM™ treatment protocol for persons with MS.
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CONTEXT/OBJECTIVE: Information about patterns of healthcare utilization for people living with spinal cord injury (SCI) is currently limited, and this is needed to understand independent community living after SCI. This study investigates self-reported healthcare utilization among community-living people with SCI and assesses disparities across demographic, socioeconomic, and injury-related subgroups. DESIGN: Secondary analysis of cross-sectional survey data administered via telephone interview. SETTING: 6 SCI Model Systems centers in the United States (California, Colorado, New Jersey, New York, Ohio, and Pennsylvania). PARTICIPANTS: Adults with chronic, traumatic SCI who were community-living for at least one year after the completion of an inpatient rehabilitation program (N = 617). INTERVENTIONS: Not applicable. OUTCOME MEASURES: Utilization of a usual source of 4 types of health care in the past 12 months: primary, SCI, dental, and optical. RESULTS: 84% of participants reported utilizing primary care in the past year. More than half reported utilizing SCI (54%) and dental (57%) care, and 36% reported utilizing optical care. There were no significant differences across key subgroups in the utilization of primary care. Participants who had been injured for 5 years or less and participants with greater educational attainment were more likely to report utilizing SCI care. Participants with higher household income levels were more likely to report using dental care. Female participants and older age groups were more likely to report using optical care. CONCLUSION: Rates of healthcare utilization among people with SCI are below recommended rates and vary across demographic, socioeconomic, and injury-related subgroups. This information can inform future research to target barriers to using healthcare services among community-living people with SCI.
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The demographics of acute traumatic spinal cord injury (SCI) have changed over the last few decades, with a significant increase in age at the time of injury, a higher percentage of injuries caused by falls, and incomplete tetraplegia becoming the most common type of neurological impairment. Incomplete SCI syndromes, most specifically central cord syndrome (CCS), anterior cord syndrome (ACS) and Brown-Sequard syndrome (BSS), constitute a substantial proportion of incomplete tetraplegia and SCI overall. Nevertheless, the updated incidence of these syndromes is not well known, and their estimates vary considerably, largely because of methodological inconsistencies across previous studies. A retrospective analysis of individuals with new traumatic SCI enrolled in the Spinal Cord Injury Model Systems database between January 2011 and May 2020 was performed. Using newly proposed computable definitions for ACS and BSS, as well as an existing quantitative definition of CCS, we determined the current incidence and neurological characteristics of each syndrome. Within the population of individuals with a traumatic SCI, including all levels and severity of injuries (N = 3639), CCS, ACS, and BSS accounted for 14%, 6.5%, and 2%, respectively. Of the 1649 individuals with incomplete tetraplegia in our cohort, CCS was the most common syndrome (30%), followed by ACS (10%) and BSS (3%). Using quantifiable definitions, these three syndromes now account for â¼22% and â¼44% of cases of traumatic SCI and incomplete tetraplegia, respectively, with CCS having increased over the last decade. This updated information and proposed calculable criteria for these syndromes allow for a greater understanding of the incidence and characteristics of these syndromes and enable greater study in the future.
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Síndrome Medular Central , Traumatismos da Medula Espinal , Humanos , Estudos Retrospectivos , Traumatismos da Medula Espinal/epidemiologia , IncidênciaRESUMO
BACKGROUND: The COVID-19 pandemic provided a unique opportunity to explore the impact of the mandated lockdown and social distancing policies on engagement in daily occupations for individuals with multiple sclerosis (MS) and able bodied (i.e. healthy) adults. The study also examined whether the changes in daily occupations were associated with health-related quality of life (HrQOL). METHODS: Between the spring and early fall of 2020, 69 persons with MS and 95 healthy adults completed an online survey that included measurements of 26 activities of daily life. For each activity, participants reported whether they continued to perform the activity (with or without adjustments), whether they stopped, or started to perform the activity during the pandemic. Social support, HrQOL, and demographics, including financial distress were also obtained. RESULTS: Participants with MS and healthy adults both reduced the number of activities performed during the pandemic. Healthy adults continued to do more activities with and without adjustments compared with participants with MS. In both groups, better HrQOL was associated with the number of activities participants continued to do with and without adjustments, and worse HrQOL with the number of activities they stopped doing. CONCLUSIONS: Fewer persons with MS engaged in everyday occupations than healthy adults following the COVID-19 pandemic. The ability to maintain occupational engagement and to participate in social and daily activities is important for maintaining high HrQOL in both groups. Thus, these results call for attention in treatment and self-management of MS symptomatology.
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COVID-19 , Esclerose Múltipla , Adulto , Controle de Doenças Transmissíveis , Humanos , Esclerose Múltipla/epidemiologia , Ocupações , Pandemias , Qualidade de Vida , SARS-CoV-2RESUMO
PRIMARY OBJECTIVES: This study examined (a) the impact of coronavirus disease-2019 (COVID-19) pandemic on engagement in activity participation in persons with acquired brain injury (ABI); and (b) whether changes in activity participation during the pandemic were associated participants' health-related quality of life (HRQoL). RESEARCH DESIGN: Exploratory online survey study. METHODS: Eighty-seven respondents with ABI and 98 healthy adults (HA) participated in this study. Engagement in activity participation during COVID-19 was calculated as a percentage of the activities participants performed before the pandemic. MAIN RESULTS: Participants with ABI modified their activities less than HA in order to maintain level of engagement in activity participation. They stopped performing more activities during the pandemic compared to HA and compared to their pre-pandemic engagement. Both groups continued to do similar percentage of activities without modifications compared to before the pandemic. Better HRQoL in both groups was predicted by a larger percentage of activities continued and fewer activities stopped. CONCLUSION: Results emphasize the importance of addressing activity participation changes during situations where there are disruptions of the individual's habits and routines in order to minimize negative consequences of such changes.
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Lesões Encefálicas , COVID-19 , Atividades Cotidianas , Adulto , COVID-19/epidemiologia , Humanos , Pandemias , Qualidade de Vida , SARS-CoV-2RESUMO
STUDY DESIGN: Secondary analysis of cross-sectional data from a multisite survey study. OBJECTIVES: To describe associations between residential greenspace and psychological well-being among adults living with chronic spinal cord injury (SCI). SETTING: Community. METHODS: Participants were from the Spinal Cord Injury-Quality of Life (SCI-QOL) Calibration Study (N = 313). Geographic Information Systems (GIS) analysis was used to define five- and half-mile buffer areas around participants' residential addresses to represent community and neighborhood environments, respectively, and to create measures of natural and developed open greenspace. Associations of greenspace measures with two SCI-QOL psychological well-being domains (positive affect and depressive symptoms) were modeled using ordinary least squares (OLS) regression, adjusted for demographic, injury-related, and community socioeconomic characteristics. RESULTS: People living in a community with a moderate amount of natural greenspace reported less positive affect and more depressive symptoms compared to people living in a community with low natural greenspace. At the neighborhood level, a moderate amount of developed open space was associated with less positive affect and more depressive symptoms than a low amount of developed open space. CONCLUSIONS: Contrary to expectations, residential greenspace had a negative relationship with psychological well-being in this sample of adults with SCI. Understanding how and why natural spaces are associated with quality of life for people with mobility disabilities can influence public policy and urban planning designs to ensure that residential greenspaces are accessible and beneficial to all.
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Qualidade de Vida , Traumatismos da Medula Espinal , Adulto , Estudos Transversais , Humanos , Parques Recreativos , Características de Residência , Traumatismos da Medula Espinal/epidemiologia , Traumatismos da Medula Espinal/psicologia , Estados Unidos/epidemiologiaRESUMO
OBJECTIVE: The current study examined health care disruptions and use of telehealth services among people with multiple sclerosis (pwMS) during the COVID-19 pandemic. DESIGN: Cross-sectional survey. SETTING: General community. PARTICIPANTS: Participants (N=163) included 70 pwMS and 93 healthy controls (HCs). The majority of respondents were from the United States (88%). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Rates of health care disruptions (eg, missing/canceling appointments, experiencing delays) and telehealth use for MS and non-MS medical care and mental health care. RESULTS: In this U.S. majority, predominantly White, and high socioeconomic status sample, 38% to 50% of pwMS reported experiencing disruptions in their MS and non-MS medical care and 20% to 33% reported disruptions in their mental health care; this was significantly lower than the rates observed among HCs. Compared with HCs, pwMS were more likely to use telehealth than in-person services, especially for mental health care. The majority of pwMS and HCs reported being satisfied with telehealth services. Individuals with higher degrees of functional limitation experienced more health care disruptions and were more likely to use telehealth services than individuals with lower degrees of functional limitation. CONCLUSIONS: Despite high health care disruption rates, pwMS frequently used and were highly satisfied with telehealth services during the COVID-19 pandemic. Due to physical limitations commonly observed in the MS population that may preclude travel, telehealth services should be continued even after resolution of the pandemic to expand access and reduce health care disparities.